Thursday, July 24, 2014

Pioneer Day

Celebrating my roots by letting go

My Pioneer Day outfit, circa 1978
On July 24, 1847 (as every young Mormon child knows), Brigham Young and an advance party of brave pioneers entered the Salt Lake Valley in what would someday (once the Mormons officially renounced polygamy) become the state of Utah. “This is the right place,” the prophet declared, evidently unaware that the California coast was just a few mountain ranges away. The Mormons, my people, exiled from their homes in Nauvoo, would build a new Zion in the shadow of the Wasatch Mountains and celebrate every Pioneer Day with picnics and parades.

This year on Pioneer Day, I sent a two-page letter by certified mail, return receipt requested, to my Mormon bishop, a man I have never met, requesting that he remove my name from the church records. Elaborating on a template I found here, I wrote:
I am taking this formal step as a direct result of your (not my) church’s decision to excommunicate Kate Kelly. A church that cannot allow good women to ask legitimate questions without fear is not the place for me. I am aware that according to church doctrine this cancels all blessings, baptisms, ordinations, promises, covenants, and my hope of exaltation in the Mormon celestial kingdom, and I have made my decision with that consideration well in mind. The Mormon version of heaven is not something I could ever look forward to as a woman. Please do not have anyone from the church contact me to try to change my mind.
Why now? For years, I lived comfortably in the ambiguous space of inactivity, accepting welcome plates of brownies, joking that I am now in a polygamous marriage to my remarried Mormon ex-husband while I have never been married in the eyes of my new Catholic faith (I had my Mormon marriage annulled). I never took the formal step of resigning from the church because I told myself it just didn’t matter that much to me.

The truth is that I left the church a long time ago, first mentally, as I had to face the growing cognitive dissonance that left me feeling broken and inadequate, then physically, as I drifted away to things that were more spiritually meaningful to me. As a practicing Mormon, I found that no matter how hard I worked or prayed, I simply did not feel a reassurance of a loving God. I did not have a testimony that Joseph Smith was a prophet. And I really didn’t think being Mormon was much fun. “If this life is all we have,” I thought to myself in 2007, realizing that I really did believe that, “then I’m wasting it.”

Kate Kelly’s excommunication was the catalyst for me to finish what I started so many years ago, when I found myself sifting through the ashes of a refiner’s fire I had never expected—my longed-for temple marriage broken, my faith destroyed. The reason I stayed active for so many years before my divorce, judging people who drank coffee, telling myself that a testimony would be the reward for obedience to rules that made no sense to me, was because of fear, not love. That fear kept me in the church for several years.

In 1993, I was a junior at Brigham Young University. One of my favorite professors, Cecilia Konchar Farr, was fired that summer, in part for supporting a woman’s right to choose. In September of that same year, six prominent Mormon intellectuals were called before church disciplinary courts and excommunicated for speaking their minds, for talking about the possibility of a Heavenly Mother, or for telling the truth about Mormon history. Joanna Brooks has written in excruciating detail about this experience and how it affected young Mormon feminists in her must-read memoir, The Book of Mormon Girl 

I heard the message the LDS Church sent then to women with doubts like mine. Get with the program, or get out. I stopped writing anything other than ward newsletters. And I got with the program—marriage, babies, ward callings, temple service, staying home to raise the children—for 13 long years.

I don’t regret the babies (now growing into lovely, independent people). I do regret all the rest. Like many who have left the Church, formally or informally, I feel betrayed by my former religion. That sense of betrayal is likely something that I will struggle with for the rest of my life.

Still, it’s no easy thing to leave the faith of my fathers. Like most people born into the Mormon church, I will never really be able to leave everything about that faith: so much of who I am was shaped by its culture and customs. And there are some things—the focus on family, the self-reliance, the way Mormons take care of their own in times of need, and of course, the music—that I continue to admire.

I am also tremendously grateful for the few church members who have remained my friends through my faith transition, and for the Kate Kellys of the world who continue to fight from within for what they believe is right. “Do what is right, let the consequence follow” was one of my favorite hymns when I was a child. I tried then—and I try now—to follow that advice. It’s just that I no longer believe that there is one right path for everyone, or that the bright-line path of Mormonism was right for me. The easy answers the church provides are no substitute for the hard questions I now ask myself about meaning and happiness. 

That's why I am joining other Strangers in Zion this Pioneer Day to declare that the Mormon church is not the right place for us. But that doesn't mean it's not the right place for you. One of my frustrations with the faith is the "us vs. them" mentality born in the persecution of the church's beginnings, the desire to be separate that drove the pioneers to seek safety in the mountain West. But this separateness does not always support the goal of building the Kingdom into a worldwide church.

The response of many faithful Mormons to Kate Kelly's personal tragedy was not Christlike by any measure. She was not a money changer in the temple. She is a faithful wife and mother in Zion. As a Mormon who chose to leave, I still remember the excuses I told myself when I watched others slip away. "It must be sin." Or "S(he) is too proud." Or "It's a pity s(he) would give up eternal salvation just because someone offended him/her." Or in the case of someone like Kelly, "What a tragedy that Satan has influenced him/her."

Maybe it's none of those things. Maybe people have genuine spiritual experiences that cause them to question their faith. I think most of us have these experiences. Some stay, ultimately finding peace and fulfillment in the Gospel. Others leave, finding peace and fulfillment in something else. But denying the validity of a person's experiences, or whitewashing the truth about your religion's doctrines, is not a good template for sustaining long-term membership in the club.

On this day, I celebrate my pioneer ancestors--their courage and faith in giving up one life to seek a better one in the Kingdom of God, "far away in the West." And I celebrate the heritage that gave me the strength to take my own spiritual journey. In the words of that still-dear Mormon pioneer hymn, "Happy day! All is well."

Sunday, June 15, 2014

All I Ever Did Was Love My Country

What we don’t—and can’t—know about PTSD (because we weren’t there)
My Dad, USMC Captain Theodore T. Long, Jr.

Note: this blog was originally written for I wanted to re-post it for Memorial Day, but then the Santa Barbara shootings happened. So I am finally posting it today, in honor of my father, an American hero, and to highlight National PTSD Awareness Month.

“Oh yes, you asked me about the rocket attack on Denang, and well, honey, just don't worry about rocket attacks at all—they're really inaccurate.  Of course, we'd take it very personally if one hit us, but they are very inaccurate, and since I've been here, rockets haven't hit at all.” Captain Theodore T. Long Jr., USMC, in an audiotape mailed from Vietnam to my mother in Layton, Utah, February 1970

For reasons I don’t fully understand, I’m obsessed with the show Madmen. This season, the clothes get ugly, the soundtrack gets funky, and it’s time to talk about hard truths that never seemed possible in those early 60s Camelot times of JFK and Jackie, pearls and Hyannisport. The one scene from an early Madmen episode that still stands out for me is Don Draper and his (then) wife, Betty, picnicking beneath stately trees in early summer with their picture-perfect children. When they leave, they don’t bother to clean up the mess they have left—why would they?

What a mess. That’s what a group of veterans told me on a Monday in late April 2014, when I was invited to visit a group of Warrior Pointe members in the recreation room of a cinderblock Christian church in Nampa, Idaho. The men ranged in age from grizzled Vietnam veterans to young soldiers who had just returned from Afghanistan. Their leader and Warrior Pointe founder, Reed Pacheco, walked in with a cell phone to his ear. He was talking with a family member of a veteran who had threatened suicide and needed an intervention fast.

Pacheco, himself a veteran of Somalia, founded Warrior Pointe because he wanted to create a space where former soldiers could come together to talk about the issues that continue to haunt them. “The VA just isn’t there for us,” he said, as heads around the table nodded emphatically. This group of 20 men have taken a new mission upon themselves: no soldier left behind.

“The first thing people ask when you get back is ‘Did you kill somebody? How many people did you kill?’’” one Vietnam veteran told me. “They just don’t understand how inappropriate that question is. We did what we had to do. You can’t know what it means to sit, 40 years later, in front of a television set reliving the same 40 seconds, over and over and over. You can’t know. You don’t want to know.”

I learned more than a few things about courage in my hour with this veterans’ group. And I also learned more than a few things about how the United States has let its soldiers down. I often wondered why so many veterans’ groups were opposed to the Affordable Care Act of 2010. “It’s the same thing as the VA,” one Afghanistan veteran told me. “You wait and wait and wait for care. And when you finally get in to see someone, they just give you painkillers instead of recommending surgery or something you need to actually fix the problem.”

That delay of care has been in the news recently, with VA Secretary Eric Shinseki facing allegations that VA clinics delayed treatment to vets who desperately needed it, then covered it up.  No one disputes that patients waiting for care died. [Since this blog's original publication, Shinseki has resigned].

The Warrior Pointe organization recognizes that all of its members, no matter where or when they served, suffer from some sort of PTSD—Post-traumatic Stress Disorder. The controversial DSM-V revised criteria for the disorder, which is now described as “a history of exposure to a traumatic event that meets specific stipulations and symptoms from each of four symptom clusters: intrusion, avoidance, negative alterations in cognitions and mood, and alterations in arousal and reactivity.” 

Pretty much everyone who went to war to defend our country could suffer from PTSD. My father likely did.

But the Warrior Pointe veterans feel empowered to help each other, where they feel the Veterans Administration has failed them. “We are all brothers,” says Tom Bosch, who suffered a traumatic brain injury in Iraq. “We understand each other. We can talk to each other. We can support each other.”

My father served in Vietnam. While the Don Drapers of the world were enjoying three-martini lunches and free love, my Dad sent anxious audiotapes to reassure my mother, who heard nothing but bad news about the war at home. Dad didn’t have to serve. He was his father’s only surviving child. He set out to write his senior thesis in Political Science to defend the Vietnam War. As he researched the subject, he concluded there was no justification for America’s involvement in Indochina. Then he graduated from college and went to Vietnam anyway.

My Dad flew medical rescue missions. As far as I know, he never killed anyone. He came home to life as a husband and father and used the GI Bill to pursue his passion to study law. But I will never forget the morning we were running errands in Bakersfield, California. The road was blocked to allow a parade, a hero’s welcome for the warriors of Desert Storm.

When I looked at my Dad, I was surprised to see tears streaming down his cheeks. “They spit on me when I got home,” he said quietly. “They called me a baby killer. All I ever did was love my country.”

Wednesday, June 11, 2014

Dear Mormons: Count Me Out!

I'm a Mormon.
Views from the Diaspora on the LDS Ordain Women Movement 

On April 5, 2014, a group of brave, dedicated, faithful women, some of them personal friends, tried to attend a semi-annual conference that has traditionally had a large “No Girls Allowed” sign on its front door—and has no plans to change its exclusionary and hurtful practices any time soon. Of course, my friends were turned away. These women are part of the Ordain Women movement in the Church of Jesus Christ of Latter-day Saints.

Today, the New York Times reported that Ordain Women founder and human rights attorney Kate Kelly had been summoned to a disciplinary hearing, where she may be excommunicated from the church she has fought so hard to change. Mormon Stories podcaster and gay rights advocate John Dehlin, a husband, father, and fifth-generation Latter-day Saint, was also summoned to a church disciplinary court in what Flunking Sainthood’s always insightful Jana Riess has predicted may signal the beginning of a new Mormon purge. 

I’m no longer a practicing member of the Church. But like many of my friends who have stopped attending Sunday meetings, I still consider myself culturally Mormon. When Facebook asks me for my religious views, the best thing I can say is, “It’s complicated.” So I’ve watched from the sidelines as my feminist friends who are still faithful Latter-day Saints agitate for change, cheering my girlfriends on, but believing that it’s not my fight. My suspicions, rooted in historical fact, are that no one ever got anywhere by walking up to the doors of the patriarchy, knocking politely, and asking to be let in.

I haven’t weighed in on Ordain Women until now because frankly, I felt like my voice didn’t count, that it wasn’t my fight. After all, I left on my own. I’m not like Kelly, who told Buzzfeed’s Laura Marostica “I never considered leaving the church. That was never on the table for me. I’m more of a person who’s like, ‘Well, I’m in an institution and I can see it needs to be improved. It needs to change; I don’t need to leave.’” Talk about the faith to move mountains!

In response to OW’s plans to attend the Priesthood Session in April, the church’s PR spokesperson Jessica Moody attempted to minimize and marginalize the efforts of my faithful friends: "Women in the church, by a very large majority, do not share your advocacy for priesthood ordination for women and consider that position to be extreme," she told Ordain Women, saying that 1,300 women who signed the OW petition were not significant in a worldwide church of 15 million members.

Well, if you’re going to count them, maybe it’s time to count me.

Because here’s the thing. When the Church says that it has 15,000,000 members, they are counting me, and lots of women like me. They’ve never formally kicked me out, at least not to my knowledge, though I’m WAY more apostate than Kate Kelley or John Dehlin. In fact, I’m so apostate that I actually went to the Dark Side, joining the Roman Catholic Church, which former Mormon General Authority called “the great and abominable church” in his first edition of Mormon Doctrine (a statement which, to be fair, was repudiated by other Mormon leaders).  Sorry, Mormons, but #OurPopeBeatsYourProphet.

Unlike many of my post-Mormon friends, I’ve never formally asked to leave. It wasn’t that big a deal to me. I still get monthly newsletters from my Relief Society visiting teachers and the occasional much appreciated plate of brownies or other home-made treat.

But if I count as a member, then I should count as a woman who left the church because I felt marginalized by policies that relegated me to the position of a second-class citizen. Motherhood does not equal priesthood, or even womanhood, for that matter. And nothing I know about Jesus leads me to believe that is God’s plan for me, or for any other woman I know.

Some of us who are still counted as members simply lacked the patience or just plain perseverance to continue to fight from within. So we drifted away, one by one, feeling, as I did, increasingly marginalized and irrelevant in a culture that emphasizes and celebrates two-parent, so-called traditional families as the pinnacle of righteous living (and hey, girls, as a carrot at the end of life’s stick, women can be “Heavenly Mothers” to millions of spirit children. No thanks—I didn’t like being pregnant in this life, so I’ll pass on that in the next one).

I can’t give you any hard and fast numbers. But everyone knows the Mormon Church is losing members fast, as both new converts and the long-time faithful grapple with cognitive dissonance, discovering less-sanitized views of their religion’s formerly white-washed (I chose that term deliberately) history.

After I expressed support for my OW friends on Facebook, one of my friends, a woman I deeply respect who is still an active member, messaged me to say that she just didn’t feel like she needed the Priesthood, since she always had access to its blessings. I remember feeling that exact same way when I was married. But after my divorce, I realized that in fact, I did not have access to those blessings in the same way married women did.  

Indeed, the issue of gender inequity affects both my former (cultural) faith and my new (spiritual) faith, as Chris Henrichsen noted in his article, “We Are Already Seeing an Exodus of the Faithful.” He quoted BYU Professor and Catholic Damon Linker’s oddly prescient observation: “in both Catholicism and Mormonism, there’s often nowhere else to go. It’s either love it or leave it.”

It seems a lot like the Pharisees’ approach to Jesus’s radical notion: “Love thy neighbor.” It's not “judge thy neighbor.” Not “expel thy neighbor.” But “Love thy neighbor.”

To John, Kate, and all my friends who are fighting for love within the religion they have chosen, I wish you every bit of luck on your spiritual quest. They would be silly and short-sighted to lose you. But to the people whose interpretation of love is to close doors and shut windows, to those “faithful” church members, I say #MormonsCountMeOut.

Tuesday, June 3, 2014

The Great Divide

Hendric Stattmann"The Grand Canyon"
Two bills in Congress, both designed to improve mental healthcare, reveal a growing rift in the mental health community

Like many parents of children with mental illness, I have spent much of my life feeling isolated. At social events or the morning water cooler, while other parents share their children’s accomplishments—“Mary got elected to Student Council! John got the MVP award for his soccer team!”—I am usually silent. It’s hard to brag about how your child was able to plead his misdemeanor battery charge down to a mere juvenile beyond control status offense, or how he was the star patient in his psychiatric ward last weekend, even though both are arguably notable accomplishments.

When I finally spoke out about the struggles my family faced, I found an instant new community of friends, mothers like me who had become vocal advocates for their children’s care. But I also discovered that not every mental health advocate supports the same goals I do. This rift in the very advocacy community that should be supporting parents like me and kids like my son has been growing for a while. The divide has widened even further after the tectonic tragedy in Santa Barbara, when a young man whose parents had sought treatment for his mental illness for years took his own life—and the lives of six other people.

At its center is a disagreement about serious mental illness—schizophrenia, bipolar disorder, and major depression—and the best ways to care for this vulnerable population. That disagreement is evident in the contrast between two proposed bills that both seek to remedy America’s broken mental health care system. To my mind, the biggest difference between the two bills is this: one treats people with serious mental illness. The other does not.

One of the most controversial features of Representative Murphy’s HR3717, the “Helping Families in Mental Health Crisis Act,” is its Assisted Outpatient Treatment requirements, which the opposition has labeled “forced treatment.” Yet even Representative Barber, the author of the second bill, acknowledged on Monday’s Diane Rehm Show that “involuntary treatment is necessary from time to time.” And many of the provisions in HR 3717, including a revision of HIPAA laws, might have stopped Jared Loughner before he shot Rep. Barber in Tucson.

Dr. John Grohol and others like him are worried about “arbitrary distinctions” in mental illness he says HR 3717 creates. I agree with Dr. Grohol’s point that all mental illness can be crippling or even deadly, just as a cold, if left untreated, can lead to fatal pneumonia. But I also think we do need distinctions in mental health, just as we have them in physical health. The current focus on behavior rather than organic brain disease is the real challenge in making sure that people with serious mental illness get the medical care that they need. As I mentioned in an earlier blog post, “Oh SAMHSA, Where Art Thou?” there is no readily apparent or useful information for me, as a parent of a child with serious mental illness, on SAMHSA’s home page. And this is the government agency tasked with providing resources to people with mental illness!

As I read the opposition’s often vitriolic attacks on mothers like G.G. Burns, a friend of mine who shared her family’s painful story with Diane Rehm yesterday, I’m reminded more of religion than science. We have this very human tendency to rely on our own belief systems about the mind, and especially about our ability to choose and to be accountable for our choices, rather than looking at the choice-stealing reality of brain disease. G.G., in talking about her efforts to get treatment for her son, told a harsh truth: “We are forced to watch our loved ones die with their rights on. Without help, there is no hope.”

The comments section of Diane’s show demonstrates the wide variety of challenges parents continue to face, and why so many of us are still afraid to share our stories. We have the mental illness deniers, the Mad in America anti-medication crowd, the folks who blame our bad parenting, the consumers who think that everyone with mental illness can seek treatment and recover like they did, and the E.F. Torrey haters (and boy, are they an angry bunch! They should try some SAMHSA sponsored yoga!).

Still, I think that a robust discussion about HR3717 is a good thing. Task-oriented conflict can ensure that the end result—fixing our broken mental healthcare system—is the best it can possibly be. And certainly the experiences of people who have experienced involuntary commitment need to be carefully considered (see this powerful essay at "The System is Broken," for example ). I wish Diane Rehm had included the voices of people with serious mental illness on her show.

But when we rely on our belief systems about what mental illness is (or isn’t), when we retreat to our anecdotal or lived experiences rather than considering other points of view, it can be too easy for the dialogue to devolve into person-centered attacks rather than focusing on productive, inclusive solutions. We don’t have time for any more of that kind of talk. The consequences of inaction on mental illness are unacceptable. We cannot continue to treat serious mental illness in prison, or to ignore it on the streets. That’s why I support HR 3717.

Monday, May 26, 2014

Without Us

Treatment before tragedy. Photo by Daniel Battiston,
Why are some mental health advocacy groups opposed to critical healthcare reform for serious mental illness?

Early Saturday morning, I woke up to the news of another mass shooting, this time in a pleasant Santa Barbara neighborhood. Details were still sketchy at that point—the shooter was young, white. and male. I turned off my computer, packed my kids and our camping gear in the car, and headed for the hills, out of cell phone range.

Like so many other mothers of children who have mental illness, I knew how the story would go. His parents would have sought treatment. He would have had encounters with law enforcement. Probably he was bullied as a child. He played violent video games. And now, he—and six other young people, all of them with promising futures—were dead.

When we returned this afternoon, sunburned and covered in sand from playing all morning on the dunes, a few new details of the story surprised me: the connection to Hollywood, the misogynistic YouTube rant (see Laurie Penny’s analysis here), the Fox News allegations that Elliott Rodger was gay (???). But Fox News aside, the media seemed to be paying far less attention to the tragedy than they were to NASCAR.

It seems as if after Newtown, we just gave up. We decided that this is the kind of society we are going to live in—a society that has too many guns, and a society that chooses to ignore people with mental illness and their families, at great cost (see Liz Szabo’s timely piece in USA Today).

Part of the problem is that just as gun control opponents and gun control advocates can’t agree on even common-sense things like background checks, the mental health community can’t come to a consensus about how best to fund—and treat—mental illness. As I’ve shared before, my son has a serious mental illness. For him, and for my family, medical treatment has restored a sense of normalcy to our lives. But not everyone thinks the medical model is best for treating mental illness.

Right now, there are two competing bills in Congress. HR 3717, the “Helping Families in Mental Health Crisis Act” proposed by Rep. Tim Murphy, promises hope to families and children like mine. The other, the “Strengthening Mental Health in Our Communities Act” proposed by Tucson shooting survivor Rep. Ron Barber, maintains the status quo, a broken and fragmented system that requires patients to be well enough to seek their own care and promotes a focus on behavior and prevention, two concepts that don’t apply to people who have organic brain diseases, people who are too often “treated” in prison or ignored on the streets.

What I want—and what Elliot Rodger’s parents no doubt wanted—is “treatment before tragedy.”

Last week I attended a webinar sponsored by SAMHSA-funded mental health advocacy groups who are opposed to HR 3717. As the mother of a child who has a serious mental illness, I’m a supporter of Rep. Murphy’s bill. But since I also volunteer for and donate to organizations that get grants from SAMHSA, I wanted to understand the other side.

The phrase “Nothing about us without us” was used 30 times in the course of the hour-long webinar. This dictum establishes the common sense model of including people with mental illness in crafting legislation that would affect their lives. It’s a good idea, and that’s exactly what Representative Murphy did over the course of his year-long post-Newtown investigation into the myriad problems that continue to plague our mental healthcare delivery model. You can read the final report here

But at the end of the webinar, I was left wondering who these probably well-meaning and sincere advocates meant by “us.” Because I don’t think they are talking about me or my son, or hundreds of other families I know.

“When young men rage and scare their families, where are they supposed to go?” a friend who was also on the webinar and whose adult daughter suffers from bipolar asked me. “I feel like I have to beg my government not to imprison my child or leave her on the street to get prostituted out or taken advantage of by druggies. All while they spend money in the name of the illness she suffers from.”

The problem is that many of the sickest among us do not know that they need help. And even if they—or their families—realize they do need help, as Creigh and Gus Deeds did, too often there are no resources available. That’s why anything less than HR3717, the comprehensive transformation of our broken mental health care system proposed by Rep. Tim Murphy and backed by 86 bipartisan legislators, is so critical.

My son has never gone to an acute care psychiatric hospital willingly; in fact, it usually takes 2-3 police officers and a tranquilizer to get him into care. I can’t do it on my own. But at least he’s still a minor, so I can make sure he gets the help he needs—if we are lucky and beds are available.

And at least when he’s not in a manic rage, he’s aware of his illness and wants to take his medications.

What happens when he turns 19? What happens if he decides not to take lithium anymore?

The alternate bill proposed by Rep. Barber fails to address this all-important question, and many others that will haunt the investigation of this most recent mass shooting.

According to Susan Mosychuk, Rep. Murphy’s chief of staff, the bill introduced by Rep. Barber 
denies inpatient and outpatient treatment options to those who are experiencing an acute mental health crisis. It denies families the opportunity to be part of the care team and help their loved ones with serious mental illness. And it denies the reality that the lead federal agency, the Substance Abuse and Mental Health Services Administration, has failed in its mission. It’s almost as if the Barber bill wants to deny that people with severe and persistent mental illness exist. Denial doesn't work for substance abuse, and denial won't work for the families whose loved ones are in a mental health crisis.
Allen Frances, the author of Saving Normal, articulated the problem beautifully: “This is the cruel paradox haunting our mental health non-system: we deliver way too much care to basically normal people who don't need it, while providing way too little care to the really sick people who desperately do.” 

So why are some mental health advocacy groups opposed to Rep. Murphy’s bipartisan-backed legislation?

In the webinar I attended, they gave three reasons: that the medical model of mental illness would prevent people from seeking mental healthcare services, that requiring accountability and restructuring SAMHSA would eliminate or curtail innovation in mental healthcare, and that HR 3717 discriminates against people with serious mental illness by forcing treatment through its Assisted Outpatient Treatment provisions. While civil rights are undeniably a concern for those with mental illness, forced treatment and loss of civil rights already occurs when we choose to treat them in prisons rather than in hospitals.

Though this conclusion disturbs me, I think the real opposition to HR 3717 comes down to money. Organizations are afraid of change, and they are afraid of losing their funding. But as the most recent tragedy so clearly demonstrated, we can’t keep doing things the same way and expect our outcomes to be better. Those of us who have serious mental illness deserve a chance at hope and health. We deserve, as my son does, to have a life worth living—and to live that life. Please don’t support proposed legislation that is written without us, the parents who love our children and want treatment before the next tragedy.

Sunday, May 11, 2014

If Only Mother’s Day Were Every Day

Thoughts on why the day doesn’t mean that much to me

The Other Happiest Place on Earth
Every year on Mother's Day weekend for as long as I can remember, the kids and I have packed the Suzuki full of tents, sleeping bags, sleds, and s'mores fixings for our annual camping trip to Bruneau Sand Dunes State Park. The sand dunes are the largest freestanding dunes in North America, and they are one of my happy places, full of good memories. We hike on the sand, chasing (and sometimes catching) lizards and snakes. We cool off in the lake and try to avoid fire ants. We join other families in hiking up one of the smaller dunes and sledding down. At night, we wait our turn to look through the giant telescope at star clusters and galaxies hundreds of light years away.

Then there are the two largest dunes, the park’s main attraction. In the early evening when the air is cool but the sand is still warm, we hike the big dunes. It's not an easy hike, as anyone used to sand will know. You have to plant your feet, go slowly, and expect some sliding. But when you reach the ridge and can see miles of Idaho countryside greened by spring rains, the silver ribbon of the Snake River in the distance, and sweeping skies that feel like falling in love for the first time, it's all worth it. We pause for a moment to rest before the real fun begins. Once we have hiked the length of the ridge back to the trail head, we leap in giant strides, like moon walkers, then fall and roll, laughing and screaming with pure joy.

But back to the holiday at hand. Part of the reason I usually leave town is that I'm uncomfortable with Mother’s Day and always have been. When another friend expressed similar discomfort on her Facebook page this weekend, as everyone else was posting pictures of their wonderful mothers, I snarked, "Mother's Day. AKA Guilt Trip Day. AKA ‘Just pay me the same as a man and skip the flowers’ Day.

We decided not to go this year. A forecast of rain, hail, and frost kept us Boise-bound, safe and warm, watching Minecraft videos on You Tube. Plus, physical ailments--hemorrhoids and that wonderful monthly bleeding, designed by their very nature to remind me of motherhood—made the trip seem less appealing for me; I was more inclined to enjoy “my” day with a glass of wine and a bottle of Vitamin I (ibuprofen) close at hand. 

I also used the weekend to re-establish control of the dire laundry situation, which had come to resemble that Star Trek episode where the cute little Tribbles start reproducing until there’s no room left on the Enterprise. After 13 loads washed, folded, and put away, I am proud to say I have everything under control except the socks—and that’s okay, because I raised my kids to think that mismatched socks were the epitome of coolness, a fashion statement rather than a faux pas.

The fact that I'm not fond of Mother's day does not mean I don’t love my mother. My Mom is one of those remarkable people who seem quiet enough when you first meet them, and then you learn that she raised six kids after her husband died of cancer, has two Masters degrees, loves to write and direct children's theater, can build a house from the ground up, and hiked to the top of Mt. Whitney at the age of 64, mainly (I think) because she wanted the summit photo as her Christmas card picture.

Maybe it’s my Mom who taught me not to be comfortable with Mother’s Day. From an early age, I was sensitive to the following groups of people who shared my gender:

  1. Women who are not mothers, for whatever reason.
  2. Women who are raising their children on their own, for whatever reason.
  3. Women who have lost a child or children, for whatever reason.
  4. Women who have lost their own mothers, for whatever reason.   
For all these women, Mother’s Day can bring more sorrow than it does joy. And instead of passing women-friendly legislation, or putting more women on corporate boards, or electing more women representatives, or fighting for women’s reproductive rights, or passing living wage laws that mostly help single moms, or helping mothers with families in mental health crisis, we relegate the whole “Mother” thing to a single day characterized by sappy cards and Champagne Brunch. (Not that I am complaining about the Champagne Brunch, mind you!).

We’re going to Bruneau next weekend. The forecast promises sunny skies and clear night for star gazing. As I look at those star clusters, millions of light years from earth, I’ll think about how far we still have to go to make every day a Mother’s Day. And how grateful I am to share my happy place with four children who gave me 13 loads of laundry, hemorrhoids…and so much more. 

Saturday, May 3, 2014

Oh SAMHSA, Where Art Thou?

Forced treatment already exists. It's called prison.
What did Newtown mean, if we can’t get help for children and families in mental health crisis?

I have a confession to make. Until about a year ago, I had no idea what SAMHSA was. I had never even heard of it. My son has struggled with serious behavioral issues for more than nine years, which we now know are caused by his bipolar disorder. We were working with a small army of social workers, counselors, school personnel, psychiatrists, therapists—and I was well-versed in a small textbook of acronyms like IEP, SMI, ADHD, ODD, ADA, etc. But not one time was SAMHSA or any of its programs ever mentioned to me as a resource.

I’m going to assume that you’re like me, that you also have no idea what SAMHSA is or what it stands for. It’s the Substance Abuse and Mental Health Services Administration, and it’s important because it gives out a ton of grant money—they have requested $3.6 billion for next year—to community organizations, many of which I also personally support with my own time and money. According to the agency’s own website, “Congress established the Substance Abuse and Mental Health Services Administration (SAMHSA) in 1992 to make substance use and mental disorder information, services, and research more accessible.”

Well, to put it bluntly, if that’s its mission, SAMHSA sucks.

A New Kind of Stigma
One of SAMHSA’s top priorities is the elimination of stigma that surrounds mental illness. And that’s important, because stigma harms children and families. DJ Jaffe of recently argued that stigma does not exist—that prejudice and discrimination are the real problem. I disagree with him on the first point, but could not agree more fervently with the second.

You don’t have to go any farther than the SAMHSA webpage to see an example of prejudice and discrimination against people with serious mental illness. Look around. Can you find anything—even the littlest thing—that talks about SMI? The message I get from SAMHSA is this: “Behavioral health is essential to health. Prevention Works. People Recover. Treatment is effective.”

I wish this were always true. For people with serious mental illness, people like my son, too often it’s not.

Pretty words, no substance
SAMHSA, the very organization tasked with serving children who have mental illness and their families, creates stigma by refusing to talk about—let alone provide solutions for—the inconvenient truths that plague too many of us: violence, prison, homelessness, fear. In fact, in its focus on “behavioral health” and “recovery,” I would propose that SAMHSA actually creates its own pernicious, subversive form of stigmatization within the very community that is supposed to be supporting people with mental illness.

Behavioral health implies choice. So does recovery. SAMHSA promotes a consumer model, where people with behavioral problems choose to get help and recover. The problem is that this approach does not reflect reality. For many people who suffer from Serious Mental Illness—schizophrenia, bipolar disorder, or major depression—choice is not an option.

Forced Treatment Already Exists. It’s Called Prison.
Why does this matter? Because right now, Representative Tim Murphy has proposed legislation that would overhaul our nation’s broken mental health system, providing much needed treatment to people with serious mental illness and restoring accountability to SAMHSA, an organization that has suffered from a massive dose of mission creep. HR 3717, the “Helping Families in Mental Health Crisis Act,” was drafted after extensive consultation with parents like me, consumers of mental health care, law enforcement professionals, and other stakeholders in this increasingly serious mental health crisis that has created an environment where mass shootings or stabbings barely make the news anymore.

But community organizations are out in full force against the bill. I know this, because as I mentioned, I volunteer for many organizations, and I am on their mailing lists. The primary rallying cry against the bill seems to be the idea of “forced treatment,” or treating people against their will. Here’s an example of the type of language they are using:
[HR 3717] is intentionally designed to make it sound benign and to gloss over the potential harm and many rights violations. For example, 'increase access to mental health treatment,' in many instances, means increased force. Empowering 'family members' means taking away privacy protections and rights to confidentiality for adults in mental health services. Expanding 'access to evidence-based treatments,' means eliminating access to alternatives that don't have the funds to become 'evidence-based.' Advancing 'medical research' means severely reducing funds to other groups and organizations, including the Substance Abuse and Mental Health Services Administration (SAMHSA). 
Oh, I get it. You can’t show any measurable outcomes for your education or anti-stigma or peer support program, and you are afraid you’ll lose your funding.

As a response, Democrats are rumored to be presenting their own mental health bill this week, eliminating the provisions of Murphy’s bill which would have helped families in mental health crisis the most. What I want to say to these probably well-meaning representatives is this: forced treatment for people with mental illness already exists. It’s called prison. E.F. Torrey, the mental health industry’s Cassandra, issued a clear-eyed warning about treating serious mental illness in jail back in 1993, and today, the problem is even larger.  

What Murphy’s bill actually calls for is Assisted Outpatient Treatment (AOT), and it’s a proven way to keep people out of jail and off the streets. In drafting HR 3717, Rep.Murphy, a child psychologist, did his homework. He talked to those of us who are living this nightmare. He knows what we need to prevent another tragedy like what happened to Creigh Deeds, or to countless other families. I want to ask those representatives who are not supporting Murphy: what did Newtown mean, if we can’t get help for children and families in mental health crisis?

I’m Okay, You’re Okay
The thing is, I also agree with SAMHSA. For neurotypical people like me, behavioral health is incredibly important to overall health and quality of life. I know this firsthand. Like most Americans, I have personally experienced bouts of situational depression. My senior year of college, I broke off an engagement. My father was dying of cancer. I could not experience any joy or imagine any meaning to life. I became passively suicidal and began to control the only thing I felt I could control: my daily intake of food.

Fortunately, my wonderful roommates intervened and got me help. I learned to overcome my negative thoughts, to exercise, to practice yoga. I developed resilience. I am grateful to the therapists, and yes, to the Zoloft, that got me through that dark period in my life. The tools I learned have proved invaluable to me as I have faced even greater challenges throughout my life. And I return to therapy whenever I need an objective third party to help me realistically assess my situational challenges. I guess you could say I’m in recovery.

This kind of thing doesn’t work for my son who has bipolar disorder. Not at all. The recovery model doesn’t work all that well for a subset of the population who suffer from addiction, either, as Philip Seymour Hoffman’s tragic death demonstrated.

In “The Lie of Focusing on Those with Serious Mental Illness,” Dr. John Grohol argued that we should treat all mental illness equally.  I respectfully disagree. We need to provide help and hope to families in crisis, before the next Newtown, before the next (insert location of most recent mass shooting). Our current system of forced treatment—prison—or no treatment—homelessness—must end.